I don’t know how the IOM selected the people and organizations to speak at the meeting. IOM staff would not release a list of the people invited, just the final list of seven who accepted. They may have invited others, although I haven’t heard anything about it through the grapevine.

There’s been some grumbling about it, including whether we were selected because of the positions we’ve taken on the IOM contract or because of what IOM thought we would say. Honestly, I have no idea. I received the invitation and immediately accepted. Some might think this makes me a sell-out, or that some or all of us should have declined.

Thanks Jennie. I look forward to hearing you speak. It's important to do so and even if I had the chance - and was an American citizen - I don't think I could manage it. Good luck. I know you'll do us proud

Thanks Jennie. I look forward to hearing you speak. It's important to do so and even if I had the chance - and was an American citizen - I don't think I could manage it. Good luck. I know you'll do us proud

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That is incredibly kind of you, @Firestormm! I will do my best, and hope that they will listen.

@jspotila, I too look forward to hearing you speak. I'm pleased you were invited and even more so that you accepted. I, for one, am confident that you will represent us exceedingly well. Thanks for your effort on behalf of us all.

Jennie, I've seen various negative comments about your past association with the CAA.

I don't know anything about your past advocacy work, but I have been following your blogs throughout this IOM process, and I think you've done an enormous amount of information gathering, and information dissemination, which has been exceptionally helpful. I also think that you have presented the information in an unbiased way, while also candidly expressing your own opinions, and acknowledging and engaging with different with points of view.

I hope that people will fairly assess your presentation to the IOM, rather than judge it based on preconceived ideas about your past associations.

(Being a UK citizen, I don't know a great deal about the CAA, but we have had problems with patient organisations in the UK. So I understand why people might have a negative attitude towards the CAA.)

Despite what many say, our community is not of one voice regarding whether we should boycott the IOM process.
I would be very surprised if the IOM provide many/any of us with an outcome that we want, or are content with, but I share the opinion that it might be helpful to make our best efforts to engage with the process, whilst also making clear any objections to the process that we have.

We can be against the process, whilst also doing our best to shape the process, even if we are ultimately ignored and disenfranchised.
If we don't make our opinions heard about ME, then we can't expect them to understand our perspective.
If we present them with the essential information, then they can't say that they were unaware of it. That will not be an excuse.

Each individual has got to decide for themselves what their preferred course of action will be.

Anyway, that's my opinion, at the moment, but my opinions are fluid because it's such a difficult issue to grapple with. I know that many will disagree with me. Like many others, I'm not expecting a good outcome whether we get involved or not.

I'm not sure we can say, one way or another, how the majority of patients feel about the IOM.

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Maybe it is more accurate to say that just going by what you read on the forums may or may not necessarily represent the opinion or extent of the opinion held by everyone in the me/cfs community. While most of us might not be completely satisfied with the IOM, there are a lot of different view s about how to engage with the IOM.

I really have been planning and still do to respond in more detail, but I need to have more energy than I do at this point in time.

So for now I will just say to Jennie, congratulations and thanks for speaking up for those who may not be able to do so.

What qualifies someone to be called or to call themselves an advocate? I've always wondered. Who exactly do they advocate for and on what authority do they do this? It seems we have advocates who make claims based on nobody's authority but their own. There is often no mechanism for them to be elected, or for them to canvass opinion. It's a strange word and often taken out of context to imply authority or expertise... And I don't really think anyone can claim to be an advocate for the 'community' as that is simply daft.

1a person who publicly supports or recommends a particular cause or policy: he was an untiring advocate of economic reform

To speak, plead, or argue in favor of.

1. One that argues for a cause; a supporter or defender: an advocate of civil rights.
2. One that pleads in another's behalf; an intercessor: advocates for abused children and spouses.
3. A lawyer.

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My bolding. An advocate is someone who consistently tries to make a difference. An advocate is a self selecting role. Advocates may later become legal advocates, or engage the services of legal advocates; scientific advocates, supporting the science; political advocates, making a political case for something; or even human rights advocates, standing up for cases of mistreatment of people. There are other roles of course. Many of the ME advocates fit several of these roles.

Advocates care. Advocates engage. Advocates investigate. Advocates support. There is nothing mystical or magical about being an advocate. Anyone commenting to the IOM can be considered an advocate, no matter their view. Anybody blogging on ME issues can be considered an advocate if they have a point of view and are not just reporting facts. Many people who post on these forums might be considered advocates, provided they engage in activity to promote their view.

An advocate is therefore probably a good citizen, or at least embodies the concept that engaging and standing for something that is right, or appears to be right, is important.

It is doubtful that someone who advocates for profit is an advocate - they are a public relations person, not an advocate, though its conceivable they could fulfill both roles.

My bolding. An advocate is someone who consistently tries to make a difference. An advocate is a self selecting role. Advocates may later become legal advocates, or engage the services of legal advocates; scientific advocates, supporting the science; political advocates, making a political case for something; or even human rights advocates, standing up for cases of mistreatment of people. There are other roles of course. Many of the ME advocates fit several of these roles.

Advocates care. Advocates engage. Advocates investigate. Advocates support. There is nothing mystical or magical about being an advocate. Anyone commenting to the IOM can be considered an advocate, no matter their view. Anybody blogging on ME issues can be considered an advocate if they have a point of view and are not just reporting facts. Many people who post on these forums might be considered advocates, provided they engage in activity to promote their view.

An advocate is therefore probably a good citizen, or at least embodies the concept that engaging and standing for something that is right, or appears to be right, is important.

It is doubtful that someone who advocates for profit is an advocate - they are a public relations person, not an advocate, though its conceivable they could fulfill both roles.

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Nicely partial treament there but - hogwash. Advocate first appears in English as a term for a representing lawyer http://www.etymonline.com/index.php?term=advocate you'll see that the intercessionary role is key, it implies that the advocate has a contractual relationship with the party (person or legal entity) on whose part they are interceding and therefore can not be acting without formal appointment or continued instruction - excepting of course that an individual can advocate for themselves.

As far as the process of 'advocating' is concerned - it implies no moral constraint, one can as well be an advocate for Satanists to be allowed to practice child sacrifice, as to be an advocate for World Peace, the only issue is on whose behalf one claims to be working. Of course Laws constrain both what can be advocated for, and the ways in which advocacy can be practiced but there's no inherent semantic or etymological limitation. The suggestion that Public Relations and allied activities are not advocy services or that advocating for profit is oxymoronic, has no basis in either common usage of the word or in its etymological history.

Minor fact - Representing Lawyers in Scotland are still knows as Advocates.

As far as repesention, be it elected, appointed or something less definitive, I defer to Tony Benn, although he applied it specifically to the powerful ..."What power have you got? Where did you get it from? In whose interests do you exercise it? To whom are you accountable? And how can we get rid of you?" At a personal level, if I can't get satifactory answers to those questions, then I am most definitely not being represented and no matter what claim someone may make to be an 'advocate', they can not possibly be advocating for me or any interest I hold, unless by accident of common benefit. Such people are therefore either working for someone else or for themselves, or for some principle or belief that they have elected themselves to pursue, honesty requires an explicit statement of which, something which is rarely apparent in the self appointed advocate.

Jennie, I've seen various negative comments about your past association with the CAA.

I don't know anything about your past advocacy work, but I have been following your blogs throughout this IOM process, and I think you've done an enormous amount of information gathering, and information dissemination, which has been exceptionally helpful. I also think that you have presented the information in an unbiased way, while also candidly expressing your own opinions, and acknowledging and engaging with different with points of view.

I hope that people will fairly assess your presentation to the IOM, rather than judge it based on preconceived ideas about your past associations. . . .

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First, let me say that I'm happy to answer questions about my past advocacy work. I served on the Association's Board from 2006-2011. I was chairman of the Board in 2008-2009, and Secretary of the Board 2007, 2010-2011. My chairmanship coincided with a time of transition for the Association. The CDC contracts ended (the Association's choice to do so), and the Board conducted extensive strategic planning and a complete revamping of the research program. At the same time I was active in presenting public comment at CFSAC, participating in media efforts and lobby day, etc. When I reached my term limit at the end of 2011, I started my blog to continue that advocacy work. I work really hard to balance between unbiased presentation of information and expressing my own views. I feel very strongly that all views should be respected and heard, whether I agree with them or not.

There's been an interesting discussion in the comments on this blog post about the content of the advocacy presentations to IOM, and what we have an obligation to say. For what it's worth, here's what I said about that:

Several people have commented about the content of the advocate presentations. For example, Lisa said that we should “give presentations that accurately reflect the views expressed by this community. Insofar as any or all of these representatives choose to do that, I will be grateful to them, of course.” And Justin said, “I hope that Jennie emphasizes the points that the vast majority of experts and patients have voiced: Listen to our 50 experts and thus cancel the contract and adopt the CCC!”

This raises an important question: do the invited speakers have an obligation to represent the majority view of the community? Don’t all views matter?

I’m in an unusual position because I am an individual. The other six invited speakers answer to their organizations’ Board of Directors. What they say will be the official position of their organizations. I have the freedom to express my own personal views.

I’m not surprised that people will judge my presentation based on how closely it aligns with their own positions. But I wasn’t invited to present on behalf of the advocacy community. I was asked to present on the one thing the Committee should keep in mind during the study. No expectation that I should be summarizing other people’s views was expressed by IOM staff.

On the question of telling the Committee that the contract should be cancelled, let’s go back to the Supreme Court analogy: I wouldn’t show up at the Supreme Court and tell them they should not have granted cert and heard the appeal. They’ve granted cert and are hearing the appeal. Telling them not to do so is pointless.

The same is true here. I will not be telling the IOM Committee that the contract should be cancelled. That’s not even up to them, anyway. And if they don’t already know that many advocates feel that way, they will know by the end of the day. Remember that several people *who signed the expert letter* are on the panel!!!!! I’m also not going to simply tell them to adopt CCC and we’re done here. Again, several experts who signed the letter are on the panel. If they want to make that argument to the Committee, they will, and they will do so more persuasively than I ever could.

Any post is only going to be a partial treatment. We are not writing definitive books on every subject.

http://www.oxforddictionaries.com/definition/english/advocate
a person who publicly supports or recommends a particular cause or policy:
a person who puts a case on someone else’s behalf:
a professional pleader in a court of justice:
Scottish and South African term for barrister.
Origin Middle English: from Old French avocat, from Latin advocatus, past participle (used as a noun) of advocare 'call (to one's aid)', from ad- 'to' + vocare 'to call'.

http://www.etymonline.com/index.php?term=advocate
advocate (n.) Look up advocate at Dictionary.com
mid-14c., "one whose profession is to plead cases in a court of justice," a technical term from Roman law, from Old French avocat "barrister, advocate, spokesman," from Latin advocatus "one called to aid; a pleader, advocate," noun use of past participle of advocare "to call" (as witness or advisor) from ad- "to" (see ad-) + vocare "to call," related to vocem (see voice (n.)). Also in Middle English as "one who intercedes for another," and "protector, champion, patron." Feminine forms advocatess, advocatrice were in use in 15c.
advocate (v.) Look up advocate at Dictionary.com
1640s, from advocate (n.). Related: Advocated; advocating; advocation.

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This last is an appeal to irrelevant authority - languages change, if not we would all be speaking proto-European dialects. The argument that follows from that is irrelevant. Its an appeal to irrelevant detail and contradicts at least some leading dictionary definitions of advocacy.

Advocates can indeed have no moral constraint. So can lawyers, politicians or bloggers. In particular advocates often argue in their own self interest. So do lawyers, politicians and bloggers. So do elected representatives. In principle politically elected or appointed representatives should be arguing for policy or they are not doing their job. Sadly some are not doing their job.

I have already stated that a public relations person can be an advocate, but what I should have been more clear about is that they are not necessarily an advocate, and I did state that clumsily.

Discussing representation is a separate topic. An advocate is not necessarily an appointed or elected representative, though they can be.

Is the argument that someone who advocates for something you do not agree with, and so do not advocate yourself, therefore not an advocate? You seem to be arguing that an advocate has to be representing someone other than themselves, and that therefore one who is not representing someone else is not an advocate. Yet its very clear an advocate does not have to represent someone but can stand for a cause or policy, and also that they can advocate for themselves.

What is clear is that an advocate should not claim to be representing a group without representation. This is unethical advocacy ... but it might still be advocacy. They can however advocate for a cause or policy without representation.

http://www.whpa.org/PPE_Advocacy_Guide.pdfA Definition of Advocacy Blending science, ethics and politics, advocacy is self-initiated, evidence-based, strategic action that health professionals can take to help transform systems and improve the environments and policies which shape their patients’ behaviours and choices, and ultimately their health.

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[My bolding]

This definition is for health professionals, primarily doctors. Note that its supposed to be self-initiated. Many private individuals, who have a concern in health, may operate on the same principles.

You, IVI, are advocating a particular position. You do not represent me, and I do not represent you. That doesn't mean we cannot advocate. Advocating is not necessarily the same as debating, though debating techniques can be used.

Arguing that advocates are not advocates is pointless.

Arguing that ME advocacy needs a large advocacy body that genuinely represents its members is however a very good idea, and one in which I am involved with in various places. We need such a body. In particular I want to see a global combined neuroimmune or ignored diseases advocacy body. Then we will have much more power to take on initiatives like the HHS/IOM disease definition process.

On the question of telling the Committee that the contract should be cancelled, let’s go back to the Supreme Court analogy: I wouldn’t show up at the Supreme Court and tell them they should not have granted cert and heard the appeal. They’ve granted cert and are hearing the appeal. Telling them not to do so is pointless.

The same is true here. I will not be telling the IOM Committee that the contract should be cancelled. That’s not even up to them, anyway. And if they don’t already know that many advocates feel that way, they will know by the end of the day.

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Telling the panel that the contract is not acceptable, and should (still) be cancelled, is not legally nor scientifically nor rationally important. Its politically important. It has nothing to do with the power of the panel to change things. Its a political message, and aimed much more at long term advocacy than current panel requirements. A similar argument applies to stating we support the 50 experts position. They all know that, but they need to keep it in mind, and we need to ensure that we are not later misrepresented on these issues.

@jspotila , You were invited, I would guess, as a patient representative since all of the others are from patient organizations. I think you were invited, rather than another patient organization, precisely because you have a less demanding viewpoint on IoM than most patients- just look at who was invited, including you- it skews toward CAA's view.

Regardless of that and regardless of the fact, as you say, IoM staff didn't expressly ask you to represent patients, it would be nice and helpful for the 17Million patients fighting for our lives if you did. Who cares what IoM staff want anyway?

I agree with Alex, sticking together as much as possible and trying to agree as much as possible and hammering home the few key points we can agree on is a political necessity! This is the only way we will make progress! This is not a late-night hang out with college friends learning about and expressing all the different viewpoints out there. That is for discussions within the patient community like here. Once we speak, especially to decision makers, we must try as hard as possible to speak with one voice. This is less about 'unity' for feel-good sake (though that is helpful), but about the realities of lobbying and advocacy that we ignore to our huge peril.

Think about George H. W. Bush. I don't think he is an idiot, but he is not presidential material. He got elected and re-elected because of his family and because he and his people stayed on message. If you and your friends all repeat the mantra you want people to believe, eventually they will believe it and act on it, regardless of merit.

If you choose not to (as you indicate) try to represent the majority of patients by emphasizing that the experts must be followed, contract cancelled and CCC adopted, then will you please make it clear that you are speaking for yourself and your views are not representative of that of the vast majority of patients and experts who have expressed views on the topic. I think doing that is very important. And not saying something boilerplate and somewhat misleading like "my views are not necessarily representative"- please say your views “are ACTUALLY DIFFERENT and less opposed to the IoM contract than the opinions of the vast majority of the thousands of patients and experts who have expressed their views.”

As of this morning, 1/23/14, there were almost 4000 signatures on a petition started by Patricia Carter of ME/CFS forums that declares: "

"We, the undersigned people suffering from Myalgic Encephalomyelitis, along with our families, carers and friends hereby ask Secretary Kathleen Sebelius to cancel the contract HHS signed with the Institute of Medicine (IOM) to develop “clinical diagnostic criteria” for ME/CFS. We further urge Secretary Sebelius to respect the consensus reached by a group of experts and adopt the Canadian Consensus Criteria (CCC) as the research and clinical case definition for ME/CFS."

By all rights the 6000 member ME/CFS forums should have had a speaking slot.

I suspect Jennie's slot at the IOM is due to her past as a major CAA spokesperson and board member.

Summarizing her participation in an organization many people with m.e. oppose, she writes:

First, let me say that I'm happy to answer questions about my past advocacy work. I served on the Association's Board from 2006-2011. I was chairman of the Board in 2008-2009, and Secretary of the Board 2007, 2010-2011. My chairmanship coincided with a time of transition for the Association. The CDC contracts ended (the Association's choice to do so), and the Board conducted extensive strategic planning and a complete revamping of the research program. At the same time I was active in presenting public comment at CFSAC, participating in media efforts and lobby day, etc. When I reached my term limit at the end of 2011, I started my blog to continue that advocacy work. I work really hard to balance between unbiased presentation of information and expressing my own views. I feel very strongly that all views should be respected and heard, whether I agree with them or not.

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This paragraph raises a few questions. Yes the participation of the CAA with the CDC ended, but why did it ever begin. One reason I can adduce for why it ended was that it stirred up a great deal of anger in the m.e. world.

The CAA was quite cozy with the CDC.

From a David Tuller interview with Lenny Jason in 2008:

The epidemiology done by the C.D.C. was atrocious. What I read was that this was an extremely rare disorder that affected less than 20,000 people, that it was primarily psychological, that it affected primarily upper-middle-class people, that it had a case definition that was put together by consensus and not by research methods, and that it had a name that was pretty trivializing. The prevalence research was very poorly done. The tests they were using were inappropriate and had a real bias for psychiatric morbidity. I realized that one needed to do basic work in diagnostics and basic work in epidemiology. I looked at it and said, “Hey, I’ve got enough work here for the next decade.” It was a real work opportunity for me.

Earlier in the article,Jason explicitly links the CDC to the CAA, using the name change issue:

When you have a more medical-sounding name, you’re saying the illness is not something fluffy, to be downplayed and ignored, and health care personnel think of it as more serious, more debilitating. I hope there will be a new name, but the problem is you don’t change names lightly, even bad names, because people come to recognize an illness by a name. I think changing it will confuse a lot of people, so it better be a new name that has broader acceptability among patients and researchers.

There is a movement developing around the world of people using different terms, and some are using the term M.E./C.F.S. The C.D.C. and the CFIDS Association are two of the last large organizations in the United States who have not come aboard.

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Jason knew exactly what he was saying, he's careful with his words.

Both the CDC and CAA use it now, but this is very belated.

Spotila endorsed,"liked", In Vitro's rant, where he dismisses the Canadian definition (There goes Lipkin)
the ICC, which was discussed here on PR:
Immune Abnormalities in Fukuda CFS patients vs ICC ME patients (Griffith Uni). Obviously, the group at Griffith's has found success in operationalizing the definition. But according to IVI and Jennie, they are engaging in stupidity.

After 6 months of reporting on the various deceptive practices and breaches of the public trust demonstrated by the DHHS, Spotila allying herself with IVI, who thinks mistrust of the government is tantamount to believing in conspiracy theories, signs on to the dubious notion that this represents a "great" opportunity. Is this not cognitively dissonant?

I suspect Jennie's slot at the IOM is due to her past as a major CAA spokesperson and board member.

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I don't really know why they invited me, and I didn't ask them. But it could be because of the amount of research and writing on the IOM process I've done. The group effort to investigate the panelists, provide information to the community so they could submit feedback if they chose, and then submitting my own feedback resulted in more than 12,000 words of material in December 2013. That doesn't make me better than anyone, nor does it detract from the important work done by other bloggers. But it might explain how I got "noticed" by IOM.

Spotila endorsed,"liked", In Vitro's rant, where he dismisses the Canadian definition

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Actually, I liked In Vitro's post because he said, "a) If someone invites you to offer an opinion on what they are doing, don’t then insult them by telling them what they are doing is a waste of time, and then expect them to ‘hear’ you." I was certainly not endorsing some of the other comments in that post, including the statement that "The 50 claimed experts are nothing of the sort if the area of expertise is M.E/CFS – there can be no expertise in an undefinable medical condition." I didn't realize that I needed to be so specific and discriminating in liking posts, or that it would be held against me at some point.

Who does Jennie represent?

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I represent my point of view. Some people agree with me, some people do not.